Newly diagnosed, age 37 stage 3a NSCLC ALK+

[warriorprincess11]

Hi there, nice to meet you all. I’m early in my lung cancer journey — was diagnosed at the end of May with NSCLC adenocarcinoma, a ~1.8cm tumor in my LLL and the involvement of two (hard to get to, maybe inoperable) lymph nodes. I’m 37, super fit and active and healthy, never been a smoker. Came as a total shock.

I’m about halfway through my treatment plan: two cycles of 6 days each of cisplatin/etoposide, and 30 days of radiation. I may or may not have surgery afterward, this is up for debate right now. And may or may not do immunotherapy.

I have a great team looking after me but I’m definitely scared about the future. My medical team insist they are treating me “with curative intent” and we’re going for a cure. I also tested positive for the ALK mutation — this doesn’t affect my treatment right now, but gives us nice targeted options “if needed” down the road. 

I’m working hard to stay positive through the ups and considerable downs. Appreciate all encouragement and tales of hope. Thank you! 

[LilyMir]

Hi there, so sorry to hear you are joining our club but happy you found this great forum. I was recently diagnosed with NSCLC stage 3b on an incidental scan. I underwent ULL resection with clean margins in April but a medial node was positive so I am now on adjuvant chemo for 4 cycles. I have EGFR mutation and they want to put me on adjuvant targeted therapy to reduce risk of recurrence since it was shown to be quite effective in trials and recently approved for clinical use. I believe some here have your ALK mutation and can better comment on the related targeted therapy. 

I am a "healthy" 49 year old with a small boy so this was the shock of my life. The wonderful people here helped me a lot and I am sure they will help you. There is lots of hope with new therapies approved over the past 5 years and many in this forum here have been NED (no evidence of disease) for long periods after treatment so there is lots of space for hope. I still struggle with the shock at times, and the harshness of treatment, but learning to live one day at a time since uncertainty is the worst and there is no solution for that but trying to be positive (or as our Tom puts it: "sanguine"). Good luck with your treatment!

[Rower Michelle]

Hello and Good Morning,

We all understand the shock of this diagnosis coming out of nowhere. I too am ALK Positive, diagnosed in 2018 having been on Targeted Therapy and in remission while taking Alectinib. 
I’d like to point out the importance of obtaining a second opinion as it is well known here in the US that immunotherapy is not effective with ALK and their could be serious clinical complications.   
Just last month, ALK expert did a Q & A about the very question your doctor has regarding treatment with curative intent. 
 

I’m hoping that you’ve had a brain MRI as that’s a requirement for all people with ALK many of whom are also under 40 years old  

There are many resources for ALK- on Facebook the ALK Positive Support Group,  the website,  www.alkpositive.org , and the annual conference is this month you can register for virtual or attend in person In Denver CO.  
 

https://www.alkpositive.org/alk-summit-2022

ALK is very rare and requires expert opinions to have access on the best treatment plans. People diagnosed with ALK can live a very long time with a high quality of life.  Let me know if you have any questions.   It’s scary in the beginning but I’m here to say you can do this.  We’ve got your back.  
Michelle

[LouT]

WP11,

Sorry you need to be here, but glad that you found us.  You've already gotten great information from Michelle and Lily and I'll add another piece here.  The is a blog titled, "10 Steps for Surviving Lung Cancer; from a Survivor" and it can be found here.  There is a lot of practical advice here from a member who was diagnosed with Stage 3 over 18 years ago and has since been declared "cured".

Stick around and ask any questions you have.  You'll find a varied group here that is great at sharing and supporting.

Lou

[Justin1970]

Hi 

Try and stay as strong and positive as you can, I hope your treatment and everything goes well for you 

Take care Justin x 

[Chuck K]

Hi there and welcome 

I was diagnosed stage 4 NSCLC adenocarcinoma about 9 months ago.I did one round of chemo while waiting on the biomarker test. It came back positive for ALK mutation. I've been on targeted therapy Alectinib for about 6.5 months now. Had a pet scan about 4 weeks ago and no cancer is lighting up.Good luck on your treatment please keep us updated

Take care Chuck

[PNWlady]

Hey neighbor!  I live about 45 minutes south of you...  Was just there to see the Lumineers

I am so sorry to hear about your diagnosis--mine came as a gut punch too as I was 49, fit, healthy, active, and a non-smoker.  I don't have any genetic mutations, but I do have a high PD-L1 expression which was tantamount for the immunotherapy I'm on to work it's magic (Imfinzi).  And it did. (Also did tons of chemo and radation prior to just immunotherapy because I wasn't a surgical candidate).  I had a PET scan in April that showed my 7cm x 6cm x 6cm tumor and all mediastinal lymph nodes to have NED.  I have another CT this Tuesday for an update, hopefully still NED....

So if my ginormous tumor and angry lymph nodes can heal, yours can too.  Keep your head up--I KNOW its difficult--but western medicine can work wonders.

How are your ears handling the Cisplatin?  That was my worst side effect.

[hillham]

Wow, when I saw your post I thought I was reading my own story! (except for the fact that I was 51, but felt 37). I was staged 3b Ros1+ April, 2021. Last summer was spent doing four rounds of chemo (cisplatin & pemetrexed) + 30 days of trudging up to NYU Langone Purlmutter Cancer Center for radiation. This summer I've already been hiking through the canyons of Southern Utah, and now I'm in Mexico taking Spanish classes with my teenage daughter. In August we're going to Sweden for two weeks as a family. I guess I over-reacted to being healthy again, but I have no regrets. Last summer I was wondering if I'd ever be able to do the things I love ever again, and here I am. 

BTW, My doctors also suggested that I take targeted therapy after treatment "just in case," but the drug I took didn't agree with me, so I quit taking it. Luckily, there are other treatments and TKIs for my mutation that I hope will work for me down the road if it comes to that. I still get very nervous before every scan, but am grateful for every moment I feel well. I'm hoping your treatments aren't too bad this summer, and that before long you'll be living your life again! I'm thinking of you and everyone who is dealing with this awful disease. FINGERS CROSSED FOR YOU!!!

[Karen_L]

Well, I think the “stay positive” stuff is great— for when the panic stops. I’ll put in a plug for feeling your feelings, learning about your disease, and trusting your caregivers. For me, focusing on the positive in day each came when I was further down the road.  Sounds like you are getting good care. You can do this!

[Karen_L]

I will add that during each treatment day, I looked for something beautiful or delightful and that was a balm for my spirit.